Surviving

It’s been a while since my last post. In fact I wasn’t sure if I would ever post again. This blog is rather bitter sweet for me now. I started it because I wanted the world to know about a very special and unique world. And a very special and unique little boy. To give people an insight into our world, raise awareness of a very rare condition and connect with other similar, special families. Well I think I did accomplish that.

You are probably reading this wanting to ask how we are, but you don’t want to ask as you worry it’s a daft question. My general response is, ‘Ok’. Plodding along. Surviving. I’m not really sure what the correct answer is.

We’ve lost something and someone incredible. I feel like part of my body is missing. It’s not just emotional pain and loss I feel, but physical too. It hurts in my chest, in my stomach, my legs feel weak and my arms ache. They ache to hold him.

But he’s everywhere. Whatever I’m doing, whoever I’m talking to, his face is clear in my mind. I think I carry him around on my shoulder. Everything I do, decision I make, he’s there. He was the centre of everything for four whole years that cannot suddenly stop.

I didn’t know what to do with myself after he died. He was my boy, my son, but also my job. We had to return all his equipment, his bed, his chair, his hoist, his wheelchair. The Motability van had to be returned. We had to notify the benefits we received on his behalf. That all stopped.

So much automatically changed.

Since he died, I’ve noticed our language has changed. We have never said coffin, Samuel is resting in his nest, never say grave but resting place and never funeral but celebration.

At his celebration, along with all the hugs and tears from those close those who barely made the effort to see him in his four years, we were constantly told how brave we were. People were looking at us, almost willing us to cry. I asked a close friend what people meant by ‘brave’ and she said it may be that people consider us to be brave because we are still standing. But we aren’t brave or strong, we just made a decision that we have to survive. We have to live. If we didn’t have our little Toby then maybe we would have been in a much darker place. But we have so much to live for thanks to Samuel’s little brother.

I’ve found people strange since he died. All those tears and hugs from people who barely made any effort with us over our toughest times. The last six months of last year were horrendous. Where were they? And we’ve barely heard from them since.

It seems when someone passes away, you hear lots from people afterwards and around the time of their celebration then silence. But that is the time you need people the most. You have nothing left to organise and arrange. You are trying to work out how to move forward. That’s when you need people. When you need support.

But we’ve been lucky too. We have a small group of close friends who not only adored Samuel but have been a constant in our lives for the last few years and since he left us. They let me talk about him whenever I need to. They are patient with me. Despite their own grief they let me say whatever I need to, however sad it may be. They are holding our hands.

We take comfort in things like he passed away at home, in his sleep, with no distress. He was in no pain. We didn’t have to make any difficult decisions. He took all that away from us.

But we tried to save him. He’d already gone, but we tried to save him. I will never forget the image of watching his Dad giving him CPR while we waited for the ambulance. When he was in hospital and they told us that he’d gone. There was nothing they could do for him. It was the most surreal thing. I stroked him and his skin was so cool, too cool. He’d passed away but I asked the nurse for a blanket. I needed to make him warm and snugly.

A lovely nurse carried him with Samuel’s Dad taking over halfway. We took him to the special end of life suite on the children’s ward. There he was tucked into bed and we cuddled him. We cried and hugged. Each other but also Samuel. The hospital chaplain who we knew came to see us and said some beautiful things. Two of my precious friends came. One to sit with us all day and the other had stopped by the house to pick up Samuel’s knitted bear and his cuddly Wolfy (I carry his knitted bear with me in my handbag and Wolfy is with Samuel in his nest). My parents and sister came to tell Samuel they loved him and to say goodbye. Auntie C who had been with Toby all day, came to visit her Samuel and to take us to Julia’s House before we went home.

We spent the day with him there before the lovely man from the funeral directors came and together with two wonderful nurses, drove him to Julia’s House. Our Julia’s House friends welcomed him and settled him into the bed in the Mermaid Suite. He stayed there until a couple of days before his celebration. They read to him, sang to him and put pictures up in the room of Samuel with us and his hospice friends. He was loved and pampered right to the end!

We visited him a couple of times at Julia’s House, as did one of my best friends and Samuel’s two special carers – his pink ladies. I struggled with visiting him as he still looked like Samuel. Like he’d wake up any moment. The funeral directors had given him a treatment so he could stay at Julia’s House for as long as it was possible. And although I knew he was starting to change, he still looked like my boy.

His celebration was perfect. I will always be pleased with everything we chose for him. It was the last thing we could do for him.

His resting place is perfect too. It’s a woodland burial ground and is so beautiful and peaceful. Just perfect.

Some people have suggested that it was Samuel’s plan. To stick around long enough to meet his little brother and to give us one more birthday. I don’t know. But knowing that there are no longer multiple strong medicines having to go into his little body every day, no more pain, no more seizures. He can finally rest. That is a relief. I do not need to worry about him anymore. The worst has happened. There is nothing to fear now.

We also take comfort in the profound effect he had on people close to us. He broke many hearts when he left. There were people who had their own special relationship with him. They saw his magic. His sparkle. They remember what his hands looked like, how he felt in their arms, the softness of his skin. I’ve been offered counseling but those close to us are my counselors, and besides, I only really want to share my grief with those who knew and loved him. They know what a wonderful boy he was and will always be. They know the enormity of what we’ve lost.

When I was at college I volunteered at a local retirement home and there was a lady in her late 70s who told me about her son who had drowned when he was only eight years old. For all those years, decades since, she said everyday her son was the first thing and the last thing she thought about. ‘From that day to this’, she said, ‘I’ve never lost the ache in my heart’. That old lady will be me. She is me. My heart will always ache for my Samuel Bear.

But he gave us four years. Four birthdays. Four Christmases. And that was more than we dared hope for when he was born.

I wonder if somehow he made sure that his little brother came into our lives before he went. To look after us and to give us purpose. His brother is nearly 16 months now and has saved us. He’s kept us going and kept us smiling.

But we want to always honour Samuel’s memory by celebrating him and making sure that his little brother grows up happy and knows all about his special big brother.

We will always be blessed for having the privilege of being parents to such a wonderful boy. We will always be proud of him. I will always be Samuel’s mum.

Samuel Luke Monk

The bravest bear, the brightest star.

Always in our hearts.

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8 thoughts on “Surviving”

I love to think of Samuel in his nest. He still teaches me about love, through you. Thank you for sharing all of this. His world is still special and unique and I don’t know if I will ever love the way you loved Samuel. I think he sent Toby to you, and I think you were meant to meet the lady in the retirement home. And I think you are brave – for breaking the taboos, for talking about child death and ARX and teaching us all about it. Because i never used to talk about or even think about it, till Samuel came xxx

I think that this perfectly sums up my thoughts and feelings. I love that Samuel’s life is continuously celebrated and I am so incredibly blessed to have been a part of his life.
I find it sad that people can’t be there and don’t know what to say to you when you need it most. But I’m again grateful to be able to go through this with you and I am forever sending love and best wishes to you and your beautiful family.
Samuels memory will forever be something that will be kept alive by those that knew and loved him.

Honest but beautifully written. I don’t well up easily but there are tears in my eyes and my heart aches for you. My mum lost a daughter when just 6 weeks old, my sister’s twin. She is very much a part of our life. When I was little I talked to her and desperately wished I’d met her (I am 6.5 years younger). Now I’m older I feel like I do. She is always there with me. She is our family angel.

I don’t know how you’ve found the strength to write again and you probably don’t either. You are doing a lovely thing though, keeping Sam’s memory alive in one particular way (I’m sure there are others) and I’m sure you are helping others to understand too. Wishing you all peace xx

Such a moving story my Brother Joseph had Arx Mutation and passed away 3 days ago at the age of 18 he suffered from very similar things such as epilepsy,Distonia, couldnt walk or talk and couldn’t support his own head, I was hoping to find out a lot more about his condition as it is so rare, thanks Thomas

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it